April 05, 2006

More Medical Fun

Time for a bit of a health update. I'm coming up on my one year birthday on April 14th. Just to keep me from going too nuts celebrating, I'm going to be having stomach surgery sometime soon. The doctors think that I have continuing issues with acid reflux and are going to tie off my esophagus in my stomach. When they tie it off, it prevents the acid from coming back up. Though it doesn't keep food from going in (though at first I'll be limited to soft foods). While they are in there they will also open up the base of my stomach to help food flow a little bit better.

I'm actually not that nervous about it. Maybe having surgery as major as a transplant makes one a little jaded. I was more bothered by the other options. One was do nothing and hope for the best, no reason to tempt fate there. The other was one where I'd have a drainage tube from my stomach and a feeding tube into my intestines. With an added bonus of just not eating food.

No word on when exactly it will be, but I'm having a handful of tests next week in preparation for it. Including my favorite test, an endoscopy.

It will all be worth it though. The reflux is something that may have been the source of a bunch of health issues, including possibly my initial lung problems. I'll still probably never know for sure, but just having a possible cause is kinda nice. And I'd rather the reflux not cause issues with my new lung.

January 20, 2006

Escape from the Hospital

Thursday morning, I went up to Brigham & Womens for a bronchoscopy. They like to do them on me now and then to make sure that everything is all fine with my new lung (one of my breathing tests was a little bit off last time I went into the office). For lung transplant recipients it a fairly regular occurance. In the past year I've had 4 or 5 (already losing count).

This time around my oxygen levels weren't so great after the bronch. It is one of the list of possible side effects of the procedure (along with fun things like them collapsing your lung). So, that combined with a wacky heartbeat (got up to 200 yesterday) earned me a stay in the hospital for a night. At first I thought the worst thing was having to do those three day hospital stays for a steroid pulse. I've now learned that the worst thing is not being prepared to suddenly have to stay in the hospital overnight. Crappy TV, only got CBS (which wasn't all bad, got to watch CSI), felt kinda grumpy, didn't sleep well, etc.

I'm home now, and the good news is: no signs of rejection. Of course that probably means some more strange tests to make sure nothing else is going wrong.

December 02, 2005

It's the little things

August 04, 2005

Back in Boston

Well, I'm back in Boston for another three day hospital stay. Three days of steroid treatments to get rid of a little bit of rejection that is still left from the last time. Three days of boredom. Anyone want to bring over a DVD to watch?

July 22, 2005

Evel Knievel and IPF

TWIN FALLS, Idaho - Evel Knievel may have finally met his match. And he's not going to clear this hurdle.

Renowned for his death-defying stunts, Knievel has now landed in major medical trouble. He says his doctors give him three to five years to live.

Knievel suffers from idiopathic pulmonary fibrosis, a condition that scars the lungs, replacing the air sacs with scar tissue. As the scars form, the tissue becomes thicker, reducing the lung's ability to absorb oxygen. There is no cure. [BillingsGazette.com]

June 22, 2005

Hospital - Day 3 - Escape!

Today at around 1:30pm I'll be escaping the hospital and heading home. This has been quite the uneventful stay, but that was pretty much to be expected. I also won't really know the results of my stay for a few weeks. The downside is that my Prednisone dose will go up for a few weeks. Hopefully I won't put on the same amount of weight as I had. I'm just shy of where I want to be.

Also, having the laptop has been a big lifesaver. I've made it through two DVDs and been able to interact with people on-line. Much nicer than just staring at the wall for hours and spacing out. Next time I'll have to let more people know that I'm going to be having a hospital stay so I can get more visitors (thanks for stopping by this moring Ece!).

And the nurse has just arrived for my last steroid dosage for my stay, which will take around an hour.

June 20, 2005

Back in the Hospital

As I said in my last post I'm back in the hospital for three days to get some nice high doses of steroids to combat some acute rejection. This is fairly run of the mill stuff, no need to panic or anything. I actually feel fine, the goal is to nip this in the bud before it gets serious.

Given that there's not a heck of a lot to do here I'll possibly be posting a bit more often than I have been.

June 19, 2005

Lung Update

Last Tuesday I had a bronchoscopy, which is a fun procedure where they send a scope down into your lungs to make sure everything is okay. In my case there was a little bit of inflammation, which can be a sign of rejection. As a result they want me to come in for three days to get some high doses of anti-rejection medications via IV.

So on Monday I'll be going into the hospital till Wednesday. If I get my act together I'll set up a dial-up account before then so I can be online from the hospital this time.

June 10, 2005

Hot Damn, Pt. 2

I made it to the end of the street and back. The key thing to do I've discovered is wake up early an do it before the day warms up. Next up is to make it halfway around the block, which will mean I can hopefully go the rest of the way around the block to return :).

June 06, 2005

Hot Damn

Just now I made it up the stairs from the first to the second floor without using my cane. I never thought I'd be so excited by stairs. The lung is working great still, every bit of exercise makes me feel a bit stronger. My next goal is to be able to walk around the block by the end of the month.

May 29, 2005

More on the Lung

After my bout with acute rejection I woke up to find myself in the ICU again. This was a kind of weird time for me. The medications they gave me to fight off the rejection/possible infection scrambled my brain a little. Between that and being cooped up in the ICU I was more than a bit confused. For a while I pretty much forgot I'd had the transplant.

For the next week or so everything snapped back into place and I remembered where I was and what I was there for. But it was so strange to look back and and my thinking still makes sense. There is a condition called ICU Psychosis what is experienced by some people, and we think I had a touch of that added in. I remember having lots of really odd dreams, which I guess had me speaking out loud too. My parents and sister have all kinds of stories of me talking about too many countries and leprechauns.

After close to a week I was moved back to step down. At this point I'd barely eaten in weeks and my weight was down 35 pounds. So the next week was gaining strength, starting to walk again (with the help of a walker). Getting used to eating again (which took some time).

After just over a week of that I was ready to head home. I was going pretty crazy with boredom and got to leave just in time.

So far things at home are going well. I get better at going up and down stairs every day. It's amazing how hard even little things like that are still.

May 24, 2005

The Other Big Thank You

I wanted to have this thank you be on its own. I would like to thank Emily for keeping this blog updated. I'd asked her to do it for me years ago and was glad that she was able to do it. My friends and family have all be so impressed with it. And it really helped keep information flowing.

The Thank You Post

There's so many people to thank for their support with my ordeal. At the very top of the list is my family. My parents, who were there for me every single day without fail, are the best. Even while I was a bit out of my head with ICU Psychosis. My sister, who came up from Louisiana and also watched over me. It was good to have her nearby.

Next are all the people who sent me cards and presents. I'm not even going to try and name everyone because there are just too many and I'm sure I'd forget. But at the top of the list would be Bree and Ellen.

And finally, a big thanks to all the nurses and doctors at Brigham & Womens. They were all so amazing. Even when I felt like I must be bothering them too much they were always there for me.

April 07, 2005

On Breathing

I've been meaning to do a lung update for ages. Since everyone keeps asking how things are going. For those of you just joining us, I have something called Idiopathic Pulmonary Fibrosis (IPF). The Pulmonary Fibrosis Foundation has a pretty decent web site on it if you want more details. But in general it means this:

Pulmonary Fibrosis involves scarring of the lung. Gradually, the air sacs of the lungs become replaced by fibrotic tissue. When the scar forms, the tissue becomes thicker causing an irreversible loss of the tissueâ€™s ability to transfer oxygen into the bloodstream.

I'm not sure how I got it or even when exactly I started feeling the effects of it. In hindsight it was quite a bit before I saw a doctor about it. To put it bluntly, it sucks. I'm the kind of person who used to walk everywhere, go out dancing till the wee hours of the morning, and just be active all the time. These days I take things much more slowly.

I've tried various treatments and none of them seem to have done much, except maybe stabilize my condition. I haven't gotten any better or worse in a few years. So, the current step is waiting for a new lung. So, not much has changed. I'm definitely towards the 'top of the list', but that is all due to change when some new regulations go into effect that will make them order the list by 'need' in another month. Bah.

So I'm now opening this up for any questions you may have about it all. Ask away, I'll do my best to answer.

October 08, 2004

Pulmonary Fibrosis and Interferon

I hadn't heard about this article until just now so thought I'd share it. My doctor did not recommend that I try this treatment as he felt that the variety of IPF I had wouldn't be helped by it, but I know of a lot of people who were really happy with the results they had on it. So I am kind of surprised at this report. At least there seems to be hope that it will help people with mild to moderate symptoms.

WEDNESDAY, Jan. 7 (HealthDayNews) -- A once hopeful treatment for pulmonary fibrosis, a fatal disease of the lungs, appears to have little or no effect on progression of the disease or on quality of life, a new study has found.

There remains some optimism, however, that the treatment, interferon gamma-1b, might benefit patients with mild to moderate symptoms of the disease. The authors of the study, which appears in the Jan. 8 issue of the New England Journal of Medicine, are launching a new trial to test this hypothesis.

The median survival time for patients diagnosed with pulmonary fibrosis is only two to three years. The disease results in a scarring of the lungs that eventually prevents the lungs from fulfilling their primary mission of delivering oxygen to the body. The only effective treatment is lung transplantation, although many people are treated with anti-inflammatory and immunosuppressive drugs, both of which have side effects... [www.medicinenet.com]

As for me, I'm just waiting for a lung to come up for me on the transplant list and wondering why this article just popped into my aggregator now if the article is from January.

September 20, 2004

More Developments in the Study of Pulmonary Fibrosis

TUESDAY, Aug. 3 (HealthDayNews) -- New research holds out hope for people suffering from pulmonary fibrosis, a deadly lung disease, by discovering that cells that travel to the organ to repair damage end up doing more harm than good.

The study found these biological repairmen, which experts had thought originally resided in the lungs, were actually adult stem cells that migrated there from the patient's bone marrow -- and this migration can be halted.

...

"It's certainly very exciting research, but the information is obviously very preliminary," said Dr. Alfred Munzer, a lung specialist from Maryland and past president of the American Lung Association. "We have to see what meaning it holds."

Pulmonary fibrosis is a chronic and often fatal disorder that is characterized by extra scar tissue in the lungs. The disease, which affects some 80,000 individuals in the United States, has traditionally been treated with steroids and other immunosuppressive therapies, but with little effect. About 70 percent of people die within five years of diagnosis. "At the moment, there is no effective treatment for pulmonary disease, and it is not that uncommon a disease," Munzer said. [medicinenet.com]

What I think about this is that it gives me hope for people who get IPF in the future. I'm already well on my way to getting a new lung, but that honestly isn't my first choice. And it isn't something available to all people. In many ways I'm very lucky in that I haven't gotten worse in well over a year (*knocks on wood*).

More Pulmonary Fibrosis News

UCLA researchers for the first time identified and then stopped a type of adult stem cell from migrating to the lung and contributing to pulmonary fibrosis in an animal model. Pulmonary fibrosis (i.e, idiopathic pulmonary fibrosis) in humans is a devastating terminal disorder that causes an overabundance of scar tissue to form in the lung.

IMPACT: The new study may offer novel therapies to treat idiopathic pulmonary fibrosis– currently there are no effective treatments and the mortality rate is approximately 70 percent within five years of diagnosis. Over 80,000 individuals in the United States suffer from the disease. [medicalnewstoday.com]

Preliminary Results From Latest Research Initiative Demonstrate Need for Lung
Transplant and Pulmonary Rehabilitation Education for IPF Patients and
Caregivers

SAN JOSE, Calif., Sept. 17 /PRNewswire/ -- The Coalition for Pulmonary
Fibrosis (CPF) announced today the publication of two new educational
brochures: 'Lung Transplantation: What Every Patient with Idiopathic
Pulmonary Fibrosis Should Know' and 'Oxygen Management and Pulmonary
Rehabilitation for the IPF Patient'.

The two brochures were created for patients, family members and physicians
alike based on preliminary results of the CPF's Basic Research Questionnaire,
an education initiative launched last year to better understand the impact of
idiopathic pulmonary fibrosis (IPF) on patients and families, and to help the
foundation grasp the educational needs that arise for those fighting the
disease.

To date, the CPF has received more than 1,400 responses to this
ground-breaking survey, and based on educational gaps identified by patients,
discovered the need for improved education and awareness on two very important
topics for IPF patients; lung transplantation and pulmonary rehabilitation.

Interim results of the CPF's research questionnaire found that among
current patients, 30 percent responded that their physician has not discussed,
or even mentioned the topic of lung transplantation, a potential treatment
option for IPF patients under 65. Of those patients under the age of 60,
fewer than half (47 percent) said they have been advised to seek a lung
transplant. Additional data from a Duke University study also indicates that
more than 50 percent of those with IPF who are on transplant lists will pass
away before a donor lung becomes available. [via Feedster Search: Pulmonary Fibrosis]

This also makes me very thankful that I found the doctors I did as I went through my diagnosis. I was quickly forwarded to a pulmonary specialist and he was able to give me a preliminary diagnosis almost immediately. Once it was confirmed that I did actually have Pulmonary Fibrosis we sat down and talked about what it all means, what treatments were available, how things tended to progress, what it meant long term, the whole thing. I still find it kind of stunning that other people have not had this same experience.

A research team at Yale has found that blocking a kind of cell death called apoptosis in fibrotic diseases of the lung, also blocks the fibrosis, opening new ways of looking at treatment for lung diseases such as pulmonary fibrosis. [via Feedster Search: Pulmonary Fibrosis]

September 09, 2004

More People Gasping For Breath

Given my issues with my own lungs, I'm always keeping my ears out for news stories about them. The scary part is that I can see this leading to more people getting things like IPF earlier in life. Not something I'd wish on anyone.

A study published in the New England Journal of Medicine this week indicates that current levels of air pollution have chronic adverse effects on lung development in children aged 10 to 18. The large study's authors conclude that the exposure leads to clinically significant deficits in adult lung function. NPR's Richard Harris reports. [via NPR News: Health & Science]